My wife has had two infusions of Keytruda. She had a gingival squamous cell carcinoma resected in 2019 with clear margins and no follow-up chemo or immunotherapy. Had course of radiation. Had recurrence in early 2020. Surgery postponed due to covid, but on the day before she was going to start chemo, they started doing surgeries again...and she was at the top of list. Had her jaw removed, 43 nodes all negative, margins clear but lympho-vascular infiltration. Within 3 months, had a dermal metastasis to the area just behind her ear and a recurrence near the TM joint extending to her orbital bone.

Started Keytruda a month ago. Had 2nd course last week. Her pain seems to be worsened a couple of days after the treatments. I figure this may be a reaction to her immune system attacking her tumors. Is this a common reaction? Get better with more treatment?

My husband was in a phase 1 trial of immunotherapy a few years back. He never had pain from the infusion. What the doctors were watching for were things like rashes and other unexpected changes. A few of the forum members did get Keytruda but I don’t recall anyone mentioning pain after infusion. I would strongly suggest that you contact your wife’s doctors and discuss the pain with them. They will be able to reassure you if it’s nothing or they will be able to bring your wife in for further examination. Very often, patients and caregivers need to advocate for themselves. Is there perhaps a help line at the hospital that you can access if you can’t get hold of the doctor immediately?

Hi Michael,

Sorry to hear about your wife. I finished keytruda/pembrolizumab in March after having 10 infusions after my surgery. I didn't have any pain, but I did end up with a few of the rare side effects. You need to let your wife's team know ASAP that she is in pain. Immunotherapy shouldn't give any pain at all

my husband did Keytruda just a few months ago. No pain. no side effects. wouldn't have known he was doing chemo and Keytruda at all.